Rebecca’s story

Meet Rebecca – 31 year old mother with colitis

I eat cake. I eat white bread. I eat boxes of biscuits, live on white refined carbs and I AM SKINNY.

I think one of the commonest misconceptions in life is that if someone looks slim, they are healthy and fit.

I can prove you wrong – yes I may be thin but it’s not because I try to be. It’s because I have Inflammatory Bowel Disease called Ulcerative Colitis.

When people say “oh you are so lucky, you are so thin” or “you don’t look like you eat dessert” they couldn’t be more wrong. I have suffered with this annoying, irritating pain of an illness since I was 16 years old and it’s really not fun or cool.

I remember so well when it all began. I woke up one morning and walked out my room and my mother said to me, “Why are you wearing that ghastly white lipstick?” I looked in the mirror and my lips were indeed white, but I wasn’t wearing any lipstick. Turned out I was severely anaemic. Blood tests showed I had a haemoglobin level so low, the consultant said he didn’t know how I was still standing. I had been experiencing diarrhoea and bleeding with it for a few weeks but I hadn’t really thought too much about it, I guess I thought I just had a bug that wasn’t going away.

It was a worrying few days while they figured out what exactly was wrong with me. After doing a gastroscopy and colonoscopy (top and tail) they discovered my colon was inflamed and I had ulcerative colitis. I needed 3 blood transfusions to get my blood levels back to normal. For someone who has a phobia about blood, this was pretty traumatic and I got the nurse to cover the whole IV line with thick gauze so I couldn’t see it. It was quite unbelievable how as the blood was being transfused into my arm, I could feel life coming back to me – you could see my face getting pinker and the colour coming back into my lips. I was given high dose steroids and a host of other medications to calm down the inflammation. The steroids caused my face to balloon into a “moonface” and I was terribly self-conscious about it. I didn’t really discuss it with anyone, I just told my friends I had “stomach problems” as it was quite an embarrassing thing to talk about as a teenager.

Stomach cramps, dashing to the toilet with diarrhoea became a part of my life and over the next ten years I was in and out of hospital with all sorts of problems relating to the colitis and side effects from the strong medication I was taking. It was a difficult time in my life and much of my young adult life was troubled with stomach pain and feeling ill a lot of the time.

15 years later and I’m on Pentasa, Mercaptopurine and steroids intermittently and it’s still very up and down – I have good weeks and bad weeks. I have tried many diets, acupuncture, herbal remedies, hypnotherapy (paid £250 to have a good nap), and other alternative medicines. Some therapies didn’t help at all and others seemed to improve the symptoms but only for a short time. I still can’t quite work out what causes a flare up. The only things I know for sure that irritate my stomach are raw vegetables, fried foods, dairy products and eating out in restaurants. My gastroenterologist claims there is no evidence that diet has any effect on colitis but I can see that sometimes certain foods can trigger an attack. When I have a flare up I am running to the toilet non-stop, everything just goes in and straight out again and any weight I have just drops off. If any of my friends moan about their weight I tell them it’s better to be well and be a bit fatter than be skinny and ill.

Has it impacted on my life? Yes, it has. I think some people have colitis and it can be well controlled. Mine just never seems to lie low. It can be really stressful getting out the door in the morning when I keep running to the toilet – and I feel so weak afterwards that I often wish I could just go back to bed.

When I’m on steroids, the side effects are awful – I become very moody and hungry all the time and my joints ache. Steroids make your bones thin so I try and do plenty of exercise to increase bone density, but that can be tricky when I’m not feeling great and have no energy.

I’m constantly worrying about things that other “normal” people don’t worry about, for example, I’m always nervous to get ill with even a simple throat infection because if I need antibiotics they cause my stomach to flare up and then I have to increase my stomach medication, which means I get a whole host of other side effects. So it can be extremely frustrating. If I catch any kind of stomach bug it takes a long time for the symptoms to settle down and it can set me right back.

Travelling is difficult – often flying and different time zones/food can cause a flare up and if you’re not in your own home it’s even more stressful. I’d also love to eat very healthily but high fibre diets are not good if you have colitis, so I end up eating a lot of white bread and cake and biscuits to fill me up, which is not ideal, but at least doesn’t irritate my stomach. Eating out at friends and family can also be embarrassing as I have to be so careful what I eat and people just don’t understand it. They usually think I’m just fussy/rude/anorexic or all three.

It is very time consuming having a chronic illness as I often have doctors’ appointments, blood tests, bone scans, colonoscopies – I could do with my own secretary to organise it all for me!

I think one of the most frustrating things is that you look very well to everyone else and no one really understands that you feel weak and tired a lot of the time.

I am much more open about it now than when I was younger as I think as you get older you don’t care as much what people think! It’s made me realise two very important things in life: Don’t judge people – you never know what’s going on in someone else’s life. And don’t take anything for granted – without good health you have nothing at all.